This 2.5-day event will bring together patients, family members and caregivers, as well as leading PH specialists, under the theme of PHighting Back: Supporting Mind, Body and Soul.

Building upon the success of the BCPHS Symposium held for the past 10 years, this year BCPHS has partnered with PHA Canada to offer a larger event that is open to all residents of Western Canada. The Symposium will begin on Friday night with a meet and greet and will feature a full day of sessions on Saturday, including a keynote dinner, and will end with breakfast on Sunday. Sessions will include an update on the latest developments in PH, a focus on emotional wellbeing, a panel answering all of your pertinent PH questions and a session on PH and yoga. This is your opportunity to meet and connect with other patients, caregivers and families, as well as to learn about the latest information in the field of PH.

AJAX — In recognition of November being pulmonary hypertension month in Ajax and across North America, an Ajax resident with pulmonary hypertension recently shared her experience with the disease to help raise awareness.
Amanda English, a 37-year-old mother of three, was diagnosed in April 2011 with pulmonary hypertension, called PH for short. The disease causes high blood pressure in the lungs and can lead to lung arteries becoming narrowed and scarred, causing heart failure. The disease does not discriminate, affecting people of different ages, sexes and social and ethnic backgrounds.

The disease can sometimes be hard to recognize. The Pulmonary Hypertension Association of Canada estimates that while between 2,000 and 5,000 Canadians have been diagnosed with PH, another 10,000 may be living with it unknowingly.

“The only symptom I noticed was breathlessness walking up the stairs. I’d have to sit down at the top of our stairs to catch my breath, and it would take a couple minutes,” Ms. English said, noting she also experienced some light-headedness and heart palpitations, adding,”It just didn’t seem right to me.”

Because several tests are required to diagnose PH, it took approximately six months for her to get a diagnosis. During that time, she turned to the Internet for advice, and was shocked at what she found.

“It was scary,” she said. “There’s a lot of old information and misinformation on the Internet, and that was our main source of information, which is probably most people’s these days.”

She recommended people looking for accurate and up-to-date information about the disease visit www.phacanada.org or www.livingwithph.ca, and encouraged people to learn more about it.

“Life expectancy is two to three years if it’s left untreated, so that’s why the awareness is, I think, quite important,” she said. “Pay attention to your body, and if you’re certain something’s not quite right then keep at it.”

While some types of PH have known causes, the cause of the idiopathic PH Ms. English has is unknown. The disease can affect people to various degrees; on the severe end, people with PH can require lung and/or heart transplants. Ms. English takes approximately 20 pills a day and wears an oxygen mask at all times to control her disease, for which there is no cure.

A former child life specialist at The Hospital for Sick Children, she has been unable to work since being hospitalized for pneumonia following her diagnosis. People with PH are more prone to being hard hit by respiratory illnesses.

Even with treatment, the disease can be hard to predict, Ms. English said.

“Another striking statistic is for some pulmonary hypertension, the statistic for survival past five years is 60 per cent,” she said. “I know my life will be shortened by this disease, and it’s just made life all the more precious.”